Yesterday I listened to a very interesting talk from Catherine Lord, Ph.D., one of the creators of the ADOS test. ADOS is the “gold standard” in the world of autism diagnosis, and she’s a leading figure in the world of autism testing and evaluation, so I jumped at the chance to hear her thoughts on where we’re headed in that regard.

People who receive an autism diagnosis are told they have one of three conditions: Autism, Asperger’s, or PDD-NOS. The big question is: who should be diagnosed with what? Is there a coherent sense of classification, or is it merely arbitrary or random? She reviewed the diagnostic data for several thousand spectrumites in an effort to determine what caused a person to end up in one of those three categories.

To her surprise, after analyzing the data, she found the principal predictive factor had nothing to do with the individual. Looking at records from a number of good university hospitals, she found places who called almost everyone Asperger, and other places where everyone was PDD-NOS. There was no discernible pattern of variation between individuals; they seemed to simply get different diagnoses in different places.

Was there more to the story?

To answer that, she looked at other factors, like IQ. For example, many people call Asperger’s “autism lite” or “high IQ autism.” Her review of Asperger diagnoses at one Ivy League school bore that out, with their Asperger kids having average IQ of 123. However, other doctors must see Asperger’s differently, because a Midwest clinic in the study has an average Asperger IQ of 85.

She looked at quality of language in older kids and found similar ambiguity. In the final analysis she did not find any consistent measures of the individuals themselves that led to one label or the other being applied.

In my opinion, those findings support the argument that there is no consistent standard that sets the three descriptive terms for autisms apart. A difference at one point becomes invisible at another. For example, you could say four-year-old Mike does not talk so he’s autistic and Jimmy talks up a storm so he’s Aspergers. But what happens when both kids are 10 and they look and sound the same? Were the differences justified? What purpose might they serve by their difference?

Her findings made one more strong argument for combining all autism diagnoses under the heading of autism spectrum disorder, with a described range of disability or affect.

That’s the way things seem to be headed for the next DSM.

At the same time, Dr. Lord expressed concern that many people have a strong personal investment in one diagnostic name or the other, and they should be able to keep using the different terms.

John, did she mention what will become of the people with Asperger’s in the next DSM? Is there a chance that they will lose diagnosis? I carry an autism diagnosis from my therapist’s office, but Asperger’s from my doctor… and, having the PA Adult Autism Waiver, I NEED that diagnosis to continue to receive services.

The DSMV has explained that what used to be called PDD as an overarching category containing Autism, Aspergers, Retts, etc. will now just be Autism with subtypes. Kids with Aspergers will still be “diagnosable” but they will be given Autism diagnoses because Asperger’s will cease to exist. I don’t agree with the way they made their decisions in regard to this but it may have a practical application in that eligibility for Regional Center and Special Edcuation services may be easier for the Aspie and PDDNOS kiddos.

John,
Thanks so very much for the post and the updateon IMFAR. I was not able to attend IMFAR as I couldn’t take time away from my own psychology practice with folks with ASD. Thurs., Fri. and Sat. are very busy clinic days for me. I’ve been watching closely from afar. Enjoying Alex Plank’s great WrongPlanet uploads and reading the 721 pages of abstracts. Do you think we’re finally getting close to “critical mass” with ASD research so that in the years to come, Aspies (ASD-ies?) will have more fulfilled and happier lives? BTW, I’m a big fan of your writings and how you have shared your own journey and musings to help others.
Sue Lerner, PhD

John,
Thanks so very much for the post and the update on IMFAR. I was not able to attend IMFAR as I couldn’t take time away from my own psychology practice with folks with ASD. Thurs., Fri. and Sat. are very busy clinic days for me. I’ve been watching closely from afar. Enjoying Alex Plank’s great WrongPlanet uploads and reading the 721 pages of abstracts. Do you think we’re finally getting close to “critical mass” with ASD research so that in the years to come, Aspies (ASD-ies?) will have more fulfilled and happier lives? BTW, I’m a big fan of your writings and how you have shared your own journey and musings to help others.
Sue Lerner, PhD

I am new to this site but my practice is mostly kids and teens on the spectrum. I think the main difference is which hemisphere of the brain is more impacted. Kids with better Left hemi functions are usually called aspies, and kids with better right hemisphere functions are called Autistic, and kids with more equal functions are often called PDD NOS, especially girls. We should do a gender study because in my reviews of prior diagnoses, very few girls are begin diagnosed with Asperger’s.